Thursday, December 1, 2011

On not being alone

I cringe to think where I'd be (emotionally) if I hadn't found this blogging world and this amazing, special needs, blogging community.

You see...for some reason, the real world only seems to have normal people, normal couples, normal kids and normal families. And for me in particular...normal twins.

But the special needs, blogging world? Well, it has people with cerebral palsy, people with autism, people with down syndrome and spina bifida and on and on and on. It has kids that need wheelchairs, and walkers, and crutches. It has adults who need communication devices, guide dogs, and adapated vehicles. It has families whose homes are filled with medical equipment. And it has families whose calendars have multiple medical appointments week-in and week-out.

And even though, I know it's not really true that the real world only has normal families, it is certainly how it feels. Like last week, I took the boys to their first introduction to kindergarten (an-hour long "session" in the classroom) and of course, Ben was the only one who arrived in a wheelchair. And needed to be carried between tables.

When I'm in the "blogging" world, I can talk about botox, and surgery, and appointments and it's "normal". I don't get pity looks and comments like "I don't know how you do it". In the "blogging" world, I can celebrate the tiniest bit of progress and know that the people "listening" will really "get it". In the real world, I feel like I have to explain so much about what the progress really means that I usually don't even bother.

In the "blogging" world, I can actually call up another mom (yes, Ellen - I'm talking about you here!) and get all sorts of fantastic information on what it's like when your child undergoes selective dorsal rhizotomy. In the real world, people don't even know what cerebral palsy is, let alone what SDR is.

And for some reason, most importantly (for me), in the "blogging" world, twins don't always do everything together. Moms don't complain that they "can't keep up with their twins as they are always running in opposite directions". Instead, there are twins that are both affected by special needs or twins where only one is and the parents don't know quite how to handle that. There are twins that go to different schools and twins that don't really get to "play" together.

I guess what I'm trying to say here is that I would hate to imagine my life without this amazing community that I've found myself in. Without it, I would feel alone and on the outside of "normal". But with it? I feel "normal". My kids seem "normal". And our life seems "normal". Because in this community, special needs are the norm.

How cool is that?

(I'm blogging as part of "CP Connection". Click on the image above to see where it started and find other blogs that are participating.")

I loved this post!! I can totally relate. I take my boys to the indoor playground all the time and I have never seen another child there with a disability. Sometimes I feel like the only one who has children with special needs. Obviously I know this is not true but my blogging friends have truly made me feel less alone and have been a huge support - including you Cary!

I'm here by following the CP connection. What a great post! We adopted our daughter with CP when she was 3, but you are right, having the entire community is so amazing. Bouncing ideas and reading others triumphs, and having somewhere to post the triumphs, its amazing!

Cary,great post, love your blog, thanks for stopping by mine love this CP connection- I am finding so many moms who are blogging too!yes I was talking about SDR, we have the gait lab in Jan to confirm he is a candidate and then hopefully get it scheduled! He will be there youngest at just 3, but he is so determined to walk!!! How old is Ben?Nice to connect with youEmma, Mark Henry's mom

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Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be. ~The Water Giver

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I'm a Part-Time Work-at-Home Mom to my twin boys, Daniel and Benjamin. They were born in September 2007 at just 30 weeks and 2 days (that's almost 10 weeks early). After 8 weeks and 1 day, we were finally able to bring them home from the hospital. A week after their first birthday, my sweet boy Ben was diagnosed with Cerebral Palsy. This blog is mostly about Ben's accomplishments and challenges but is also about me, my family and anything I feel like sharing. Email me at aboutthesmallstuff at hotmail dot com